What can be done to help my son?

edealwis

Hi
My 14 year old son Oliver was born with a condition called Syndactali. So he has a small hand & the fingers were webbed.
 He was operated on age 1 to separate the webbing which gave him more flexibility but his fingers have remained small in proportion to the rest of his body & he is unable to bend the index finger. 
The middle finger is like rubber & is very bendy. As he has got older he has become a lot more self conscious of his hand & hides it all the time.
 He was also diagnosed with ME almost 3 years ago & has had very little schooling in all that time.
Currently There is no cure for ME.
There is hardly any money being put into research for a cure so no medicine is available.
I am concerned about my son’s mental & physical health, but am writing to you today to see if you may be able to offer any suggestions as to what can be done to help Oliver.
Today he told me he hates his hand & wants to do something about it to change it.
 I don’t know if this is possible but thought you may be able to advise me. 
Many thanks

Liz De Alwis

CockneyRebel

Hello Liz and welcome

Please give the help line a call and they may be able to point you in some direction

CR

Sam_Scope

Hi @edealwis welcome to the community, I have moved your post to the ECHP category where I hope @IndependentSupportServices may be able to help.

@Jean_Scope may also have some information and support for you.

Pippa_Scope

Hi @edealwis, I just wanted to add to the above that I have M.E myself and completely understand the frustration with the current funding situation. If you have any M.E related questions, just let me know and I'll do my best to advise!

Jean_OT

Hi @edealwis

Oliver is at a life stage when many young people can find it very difficult to be ‘different’ from their peers.

I wonder if it would be worth talking to Oliver’s GP and asking for a referral to have his hand assessed by a  specialist Hand Team such as: http://www.gosh.nhs.uk/medical-information/clinical-specialties/hand-and-upper-limb-surgery-information-parents-and-visitors/meet-hand-and-upper-limb-team

The team might be able to suggest a medical intervention that might help, and if they can’t Oliver would at least know definitively that there is nothing further that can be done to alter the appearance/function of his hand.

If sounds as if Oliver has had a lot of challenges to deal with so I also wonder if some sort of counselling or psychological therapy might help his emotional wellbeing and perhaps assist him in improving how he feels about his hand. Again, this is something that you could talk to Oliver’s GP about. Also the charity YoungMinds has a helpline concerned about the emotional wellbeing of a young person and lists of resources where young people can get support: https://youngminds.org.uk/find-help/your-guide-to-support/need-to-talk/#advice-and-support-for-all-kinds-of-problems  

Great Ormond Street Hospital suggest that a support group called REACH is a good organisation to signpost people affected by Syndactyly to: http://reach.org.uk/

Best Wishes

 

Jean

https://community.scope.org.uk/categories/ask-an-occupational-therapist

edealwis

Thanks to all of you for the advice in response to my message. 
We saw the GP today & she is referring Oliver to see an orthopaedic surgeon.

IndependentSupportServices

Hi @edealwis If your son is not receiving appropriate schooling, it may be that he needs an EHCP in place to support him. Your local Special Educational Needs and Disabilities Information, Advice and Support Service team will be able to give you more information about ensuring he can access education.You can find details for your local team by doing an internet search for SENDIASS and your town/area. You can also search for the SEND Local Offer which is a website detailing all support available for parents of children with SEND and has many useful contacts.